r/spinalcordinjuries

Hey everyone. This might be a little random, but I’d really appreciate some perspectives from others here.

I’m a 36-year-old guy and have been living with a C5-6 spinal cord injury for about 16 years. When I was younger and first injured, I really didn’t think having children was something I wanted. Part of that was wondering how I would physically manage some aspects of parenting.
As I’ve gotten older, though, my perspective has changed quite a bit. I recently got out of a relationship, which has had me thinking more about what I want my future to look like. And I’ve realized that I would genuinely like to have at least one child someday.

I feel like I’ve built a pretty good life for myself. I’m well educated, have a good career, drive independently, travel quite a bit, and am financially and personally stable. I’m pretty easygoing, don’t smoke or drink, and the people close to me have always told me they think I’d make a great dad.
Obviously, having a C5-6 SCI adds some things to think about when it comes to parenting, and I know it would take the right person who is comfortable figuring out what that life could look like together. Physically, I’m also fully “functional” sexually, so I don’t know whether IVF or other fertility assistance would even be necessary.

For those of you with SCI or other significant physical disabilities who decided to have children: What has the experience been like? Are you glad you did it? Is there anything you wish you had known beforehand? I’d especially love to hear how you handled the physical parts of parenting when your kids were babies and toddlers.
And if anyone decided not to have children because of their disability, I’d appreciate hearing that perspective too. I’m open to all feedback, positive or negative.

Also, throwing this out there because you never know who might be reading, if there happen to be any single women around my age who can relate to this and might be open to talking, feel free to message me. Apparently I’m not too bad looking, and I’ve been told the blue eyes help.

It's been over a month post accident and I have regained much feeling of my legs touch feeling wise. I still cannot stand or walk. But there seems to be this band of complete numbness from Penis to lower back including my anus. By numb I mean absolutely zero feeling touch and muscle wise. Like I can move the muscles in my legs while still having numb skin, but this area is completely different. Without my bowel program I'm incontinent and still have to use a catheter for peeing.It's an embarrassing question to ask but I'm wondering if anyone has had a similar experience and any info on whether this is common or not.

18F, My left leg is paralysed from the knee down, basically unless i look at my leg i believe it ends at the thigh, this was after i was hit at 100 as a pedestrian and the knee took all impact 2 years ago, over the weekend my limb decided to go dark and cold, so i presented to emergency on Monday night where they made me wait 8 hours then sent me home because they "didnt want to do anything", I dont know if paralysis and dark cold limb is serious, i think it is, i believe the hospital shouldve acted better especially as i cannot walk at all, im on crutches, non-weight bearing, dragging my leg i cannot feel, the rest of my body is in so much pain from overcompensation, but im not a doctor, my doctor ruled out vascular as my leg would be pink and warm instead, advice anyone on what i should do, should i present myself again, what should i do with my leg so i can walk again because nothing is working, advice on anything tbh, i know this is a spinal injury sub but i think this is the one where most people will know about whats going on hopefully

Recently I have been having thoughts of wanting more out of life. I have carer's who help me on the bed at 6 but I get claustrophobic thoughts and have to have my wheelchair near the bed, even though I can't manage to get into it on my own.

Is there anything I can do, I feel like I'm going crazy?

So I’m 18 f I got injured at 15 by a gunshot and now I use a wheelchair and have a sci . I js feel like after that everyone treats me so different , no body js casually reaches out to hang with and I feel like bc I may be to much and might mess up plans or something. I js feel alone and wish everyone treated me like before it’s like all they see is my wheelchair , I wanna do regular things to and not be left out .. am I the only one struggling with this rn and then it’s no better bc I js graduated hs so now I’m really am by my self

I’m 35F and have been in hospital/now rehab for a total of almost 7 months. (C4 incomplete from a spinal stroke). My estimated discharge date is September 15, but they think I may be here still a couple of weeks past that date. Regardless, I finally get to go home soon!

I am so excited to go home to my husband, but am finding that I’m super nervous about sex after my injury. Our sex life before my injury was super healthy; fun, intimate and quite frequent. We are the best of friends and love each other so deeply. I’m finding that I am very scared to disappoint him. What if we can’t have penetrative sex anymore? What if I can’t orgasm anymore, or attempting to make me reach the big O results in AD? I am both super excited to explore this stuff but also sick to my stomach with worry…We weren’t shy when it came to toys & figuring things out together before, so I’m not sure why I’m so nervous now. The AD stuff does scare me as I’ve experienced it twice in hospital and it was a horrible time. I have a Foley catheter & when I asked my doc how that works for sex with my husband, he said we can tape it out of the way?

I guess any advice related to this from any perspective would be extremely appreciated and helpful!

Why do some get swollen feet and legs and others don’t?

Do any other incompletes have full sensation below the level of injury? Or almost full sensation? It seems rare but maybe I just haven’t talked to enough people

Hope this is allowed here. I was paralysed as a side effect of a cancer treatment I received. It all happened in 24 hours, and it affected my brain too in that time. So I sort of blacked out, and when I came to, I couldn’t move my legs. 5 weeks later, I still can’t. They think it’s inflammation at at T10 that’s pressed on my column it went into shock. Neurologists can’t tell me anything about when or if anything will come back, and if it does to what extent. The inflammations probably gone now but it’s up to my body to repair the damage if it can.

I can’t really wrap my head around it. Up until recently I was just focussing on getting back to my two young daughters. They’re only 4 and 1. Having a birthday party for the 1 year old in the same hosp I gave birth to her in a year ago was a headfuck. But recently, I’ve begun to realise that, if I don’t regain the ability to walk, I might just be impacting their lives for the worse. Having to make alterations to the house, destroying its market value, they won’t be able to do things all their friends can with their mums. I would need looked after by my husband, taking time away from them. And I would’t be able to do all the things I used to for them - cooking, picking them up when they fall, climbing playground apparatus with them, showing the baby how to go down a slide. I wouldn’t be able to safely be left alone with them for a long time, if ever. And all of this makes me realise….i think I might remove myself from the picture if I don’t get my legs back. My kids deserve better, and they won’t remember me at this age too much.

This has been a rollercoaster. I was so determined to beat this cancer (results still pending), but now I just want to give my family the best chance at a normal, fulfilling life. It hurts to realise that that may be without me in it, but ultimately I need to do what’s best for my children.

PRESS RELEASE: BreakThru SCI Launches National Advocacy Mission to Accelerate Spinal Cord Injury Treatments
Congressional briefing scheduled September 17 to educate policymakers on emerging restorative therapies and the priorities of the SCI community
[Chicago, IL] — [August 18, 2026] — BreakThru SCI, a 501(c)(3) grassroots advocacy organization, today announced its official launch with a mission to help accelerate the approval of promising treatments for spinal cord injury (SCI). BreakThru SCI is coordinating a national advocacy campaign to educate policymakers, mobilize advocacy groups, and engage key industry and regulatory decision-makers to ensure the accelerated and patient-informed regulatory review of restorative SCI treatments.
To raise awareness and inform Members of Congress, congressional staff, and the broader community, BreakThru SCI will host a Congressional Briefing on Thursday, September 17 at 12:30 p.m. EST in Room G11 of the Dirksen Senate Office Building on Capitol Hill. Held during SCI Awareness Month, the briefing will explore the misunderstood biological complexity of SCI, the emerging pipeline of novel restorative therapies, the firsthand perspectives of SCI clinical-trial patients, and the designated regulatory pathways for high unmet need areas.
“As a former longtime leader at the FDA, I encourage patient advocacy organizations like BreakThru SCI to step forward and help shape the regulatory landscape by giving voice and perspective on what is meaningful to those most affected,” said Janet Woodcock, M.D., former Acting Commissioner of the Food and Drug Administration (FDA), who will offer remarks at the Congressional Briefing. “This kind of constructive engagement with policymakers and regulators is essential to advancing patient-focused drug development for conditions with significant unmet need.”
Spinal cord injury is one of the most biologically complex and misunderstood conditions in medicine. In a matter of seconds, a spinal cord injury can transform an active, independent life into one defined by paralysis, loss of sensation and bodily function, dependence on others, and a lifetime of physical, emotional, and financial challenges. Despite decades of research, more than 300,000 people in the United States are living with SCI, yet there are currently no FDA-approved drugs capable of restoring function post-injury.
Today, a growing number of restorative therapies are advancing through clinical development, creating new urgency and hope for the SCI community. Given the nature of SCI, meaningful recovery will look different for each SCI patient, reinforcing the important role of the patient voice in clinical and regulatory review.
“BreakThru SCI’s grassroots advocacy strongly supports the Christopher & Dana Reeve Foundation’s mission of curing spinal cord injury,” said Maggie Goldberg, President and CEO of the Christopher & Dana Reeve Foundation. “Especially in a time when promising SCI treatments are finally within reach, there is a growing need for organized advocacy that ensures the lived experience and priorities of the SCI community remain at the center of regulatory decision-making.”
BreakThru SCI was inspired by one family’s journey following their son’s cervical spinal cord injury and their firsthand experience participating in a groundbreaking clinical trial. Their direct experience underscores both the potential of emerging restorative therapies and the need to recognize that meaningful recovery is different for every person living with spinal cord injury.
“Every spinal cord injury is like a snowflake. No two are the same,” said Suzy Scherb, Executive Director of BreakThru SCI. “Because every injury is unique, meaningful recovery looks different for every person. One individual may regain some hand function, another more bladder control, and another the ability to take steps. Every gain matters. Even modest improvements can dramatically increase independence, health, and quality of life. That’s why it’s critical that the voices of people living with SCI help shape how promising therapies are evaluated and approved.”

How many of you paid privately for extended / advanced rehab after you were discharged? I’m from Ireland and have been home permanently for about 3 weeks. I’m a T12 complete due to the fact I have no sacral sparing atm but I have movement in my left leg and lots of sensation below my injury line.

I have started going to physio once a week and started strength training, I also stand 3/4 times a week and I am generally moving a lot and I am feeling stronger every day, however I am worried if I don’t go to one of these advanced spinal rehab centres I am wasting my potential for healing. The NHS rehab centre I was sent to really wasn’t that great.

They cost a lot of money that I don’t really have. I might enquire into a few over in England just to see what the costs are but are they definitely worth it? Can these spinal rehab centres bring back any movement that won’t come back on its own?

I know, another dick/erection/sexual function grieving post. Sorry, but this and the bowel disfunction is truly the cruellest part of this injury.. As I'm sure I don't need to preach that to any of you.

I am 16 weeks post injury, T12 "complete" however I have movement and power in my left leg (not enough to load weight onto it but I can move it quite a lot) and I am also getting muscle flickers in my right leg, I also have lots of altered sensation below the waist including my pubic area, testicles, groin and base of my penis but unfortunately not the tip. I can get a natural semi erection, maybe like a 30% erection by just watching porn, if me and my partner start making out or start getting sexual the natural erection can be considerably stronger but definitely not strong enough to have sex, I would need to take sildenafil to make sure the erection is strong enough and that it lasts.

My doctors told me that even though I have sensation and movement below my injury level, I am still considered complete due to the fact I have no bowel and bladder function, I don't know how much truth there is in this as it doesn't align with what a lot of other say about being complete or incomplete but.. That's what I've been told. By their logic if I was able to walk but still had no bowel or bladder function I would still be complete?

Anyway, I'm here wondering if anyone got any return of natural function or sensation to your penis, and how long did it take? I know every injury is different and I'm not here to look for a way of getting my hopes up, I am painfully aware of the reality I'm facing. I just want to hear of personal stories of similar type injuries.

I don't know if I'm imagining it but I think I am feeling a bit more sensation in my penis than I was a couple of months ago. When I wake up in the morning and pull my foreskin back I can almost feel like a sharp sensation down my shaft but its very faint. When I am getting horny with my partner or jerking of to some porn I can feel a kind of warm pulsing sensation, almost like I can feel the blood rushing down there. When I play with it through my trousers I can feel lots of sensation in it as the fabric rubs of my groin/balls/pubic area and sends signals all over the place down there. I also still produce pre-cum.

I am using and playing with my penis as much as I can in the hope some nerves wake up, I try and have sex about once a week atm with my partner but we are very busy with sorting out every other aspect of our lives since the injury.

Share your sexual function story!

Was denied bc they said I have “limitations” and that I’m not disabled. I only work four hours a shift because I will be in physical pain if I work longer. How are they going to tell me I’m not disabled and they haven’t even seen me in person.

So sadly my mother recently suffered a fall that resulted in a C3-C7 fusion and laminectomy and quadriplegia. She’s only 12 days post surgery and still hospitalized waiting on snf and rehab placement. She has some movement of upper arms and wrists but currently no hands.

So she’s an avid reader and has always used her kindle. She’s asking how we can get her reading again. The holder/mount seems like a solved problem.. the issue is page turning. I see the remote controls and the ring style buttons to turn the page but I don’t think that will work for her right now.

Does anybody know of other solutions? Voice activations would be very challenging as she’s never been technologically savvy and she really struggles to find her words (especially now with the nerve meds). So I guess I’m looking for some sort of physical activation by head motion, arm motion (would have to work with her spastic movement), etc.

Thanks for any help or insights.

My dad 63 years old recently got injured with a CCS he is recovering good in Physiotherapy and occupational therapy he has many developments since injury
He can pull and push his legs and move them up

But recently the physiatrist said to him he has HO which is effecting his posture that’s the reason he is leaning towards one side the doctor prescribes bisphosphonat weekly once after use of Indomethacin

but trunk balance is difficult for him due to bone growth says the OT person he was scared of the news he heard

Does HO is common in spinal cord injury patients?
Does it effect them to walk or progress further?
What are the treatment options for that? And can it be stopped with medication?
What are your experiences?
Please share me your experiences with the same problem!!

有人知道关于澳洲嗅鞘细胞神经桥的消息么?具体什么时间开始?任何有关的消息请分享上来，我知道，很多患者在焦急的等待中，我们需要惊喜，

Hi all!
On July 10th 2026 my 18 year old son and his friends went on a hike. It had rained earlier in the day before the hike. He had hiked this exact trail 20+ times in the past. But this particular night, he slipped and fell 30 ft on an old dried up waterfall. He was a mile in the woods and it took paramedics an hour and a half to get him out. He ended up with T12, C1 fracture. This Wednesday he will be discharging the rehab facility to come home. While I think he was pretty lucky, he’s still unable to move his left foot at all. He also cannot pee on his own. I know it’s early, but how long has it taken others to regain other movements?